a day in the life

Just a glimpse at a “day in the life” from recent page in visitor’s in room journal. Patti’s memory is of little help so much like facility staff we use journals such as this 'on line' or 'in room' for family and friends to communicate to each other.

 

Such communication helps us all since Patti cannot remember what she may have eaten, when she ate, what she did, where she went, who visited, etc.

 

MS is a thief! Friends and family (as I have mentioned before) have to think and work outside the box to keep involved and up to date.

 

Pictures of daily activity calendar pages gives you a glimpse of what the facility offers in lieu of visits from family and friends.

Labor Day

It was a family filled Labor Day today for Patti. Megan and I picked her up around Noon and returned her around  9 PM after a day spent visiting with her parents, brothers, and their families.

 

Sadly it was marred with a bowel accident. Patti’s strength (even after a nap)  is in such a weak lull that she was unable to transfer, fell, and required four of us to complete getting her off the floor, showered, and dressed.

 

It was also some what disconcerting to discover a ‘transfer sling’ now part of her wardrobe. Though I certainly can understand it after our struggles today it is a new level of progression. I say ‘part of her wardrobe’ in that they leave it on the seat of her chair and she sleeps on it. Staff simply attaches sling to lift and can move Patti mechanically in and out of chair or bed.

 

More than ever I am grateful she is safely where she can have the professional help and equipment.

Visitors

(from Patti’s Mom)

[Friday] … I put a package of Depends in Patti's closet this evening, she was running low.  We had a nice close game of Trivial Pursuit and then left to go home at 7:30.

(from her life long friend, Sharon)

Hi, Patrick, does Patti have any plans or anyone else visiting on Saturday?  If not, I'd like to visit and bring her either lunch or dinner, paint her nails, etc. 

never have too much Dairy Queen

Megan and I stopped by Thursday evening with a Dairy Queen milk shake to visit Patti. We keep a big wall calendar in her room for guests to write on and discovered her Aunt and Cousin had taken her out earlier in the afternoon to Dairy Queen for a banana spilt! Ah well, I guess you can never have too much Dairy Queen. <grin>

I brought home a stack of Patti’s cards of well wishes from friends and family intending to write thank you cards. However why not also share the cards on line? It’s easy with our digital camera. An experiment in crossing between the cyberspace world and the real dimensional world.

benchmarks in ‘living with MS’

Monday was the FIRST day of school! More significantly the first day of school that I ever rode in the passenger seat while our daughter drove with her learner’s permit. (7 more weeks and she can take her test for a driver’s license).

A ‘First day of school’ that Patti failed to attend through all the years of struggling with MS. Frankly it was the least hectic 'first day' morning in years because Patti was safely asleep at her care facility.

MS related problems such as falls, mental confusion, and bowel and bladder accidents have increasingly complicated “first days” of school over the years.

Pluses and minuses aside it was still one of those poignant benchmarks in ‘living with MS’.

While on the topic of school and as today is Sept 2 ...

                “I touch the future. I teach"

              Christa McAuliffe, US teacher (1948-1986) born on Sep 2

                         She was the first teacher in space; 

          died in explosion of space shuttle Challenger, 28 Jan 1986

WELCOME SEPTEMBER

Clouds of fog hiding just beyond the tree line this morning was a teasing peek at Fall.

Mental Confusion

Mental confusion was far more of a problem Tuesday evening than any Presidential motorcade. I arrived around 4 PM to pick Patti up for ‘Chinese carry out’ at home.

She heard my voice in the hall and, though unable to see me, was most excited and eager to confirm that she was a grandmother. (???) She “knew I was picking her up to go see Megan’s babies!”

As I had just left our only 16 yr old daughter doing her homework and not even pregnant to my knowledge this was an interesting conversation.

Logic failed to help dampen Patti’s excitement because even when I tried to explain that Megan was still ONLY 16 and not even pregnant. Patti offered that maybe her babies had babies.

From past experience when Patti gets totally detached from reality like this (gets “totally random” as Megan calls it) it is best to just distract her. The way MS causes her mental process to malfunction it is impossible for some one on the outside to get it back on track. I have found it helpful if you can get her thinking along with you on a different track about something else then somehow the brain ‘reboots’ like a computer.

I had two chairs on a dolly to switch out with some in her room. I involved her in playing a game of pushing the dolly while I pushed her chair. It was more like a demolition derby and she was soon howling with glee

I think people in wheel chairs have a suppressed desire to ram things!

Bush to picnic here

(‘here’ is less than 4 miles from Patti’s care facility)

-------------------

Bush to picnic here      

By Kristin Wilson, August 30, 2004

 

President George W. Bush will visit  tomorrow to watch a softball game at North Middleton Township ...

 

http://www.cumberlink.com/articles/2004/08/30/news/news01.txt

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('here' is also close enough that the Presidential motorcade and I could be at odds trying to bring Patti home for a visit this evening. Alas! The price of living in a 'battleground state'. <grin>)

secret source of sanity

I can’t help but acknowledge our cats as a secret source of sanity through all the 18 years of ‘living with MS’! None of the levels of Patti’s progression have fazed them. Our oldest is two months older than Patti’s diagnosis.  

If you ask Patti what she misses the most living in a care facility she’ll tell you ‘the cats’’.  Makes you feel real appreciated as a caregiver.

“Ensuring Your Future..."

MSAA “The Motivator”, Summer 2004 has a fair and comprehensive article on insurance for families living with MS. “Ensuring Your Future: Selecting insurance for you and your family’s financial security” is the kind of article you want to read early and not from retrospect.  Actually it could benefit anyone unless of course you are psychic and can foretell you and your family’s health for years to come. It is not written by an insurance agent trying to sell you anything <grin>

 

The Multiple Sclerosis Association of America can be found on line at www.msaa.com  Their publications are available on line but there seems to be some delay before the most recent magazines are available. You can request a print copy.

 

What I found even more interesting as part of their redesigned web site are the "reader controlled preferences". With a click of the button the READER custom controls text size and keyboard navigation. Visual problems and spasticity are typical MS symptoms than can impair use of the Internet.

 

Like so much about MSAA this redesign is “to ease the day-to-day challenges of individuals with multiple sclerosis and their  care partners”.

 

I try to remind people that there are two MS national organizations. The other is the NMSS (National Multiple Sclerosis Society), the juggernaut with headlines and the lion’s share of fundraising.

 

At the risk of oversimplification NMSS focuses more on finding a cure while MSAA focuses more on easing the day to day challenges. Please visit them both. Knowledge is power and more importantly HOPE!

boogeyman of 24/7 care

Death & taxes used to be the proverbial ‘universal truths’ that everyone had to face.

 

A chronic disabling illness can alter lives as it did for us. An accident can change the future in the blink of an eye. Age takes its toll.  Modern medical science can keep us alive much longer than ever before.  For some this may even exceed the quality of life line. For many people this is certainly long past the line where they can care for themselves.

 

Caregiving is moving into that universal truth category.

 

Who is going to take care of ME? Can I depend on my spouse to stick around? Can I depend on my family?

 

Or … am I willing, or even physically able, to sacrifice ‘me’ to care for another?

 

Or if you want a chuckle, can I trust my insurance? Can I trust the government?

 

The childhood ‘monster under the bed’ had grown up, and become the boogeyman of 24/7 care.

 

MS forced us to deal with a reality we thought we would have decades to dodge. We knew homecare was failing. Patti needed more and a care facility was an unknown. We HAD to 'look under the bed' and separate fact from worry.

'drop in' any time of night and day

The JOURNAL era is changing the way I communicate. I know I am nudging many friends into using it to find out what is going on in our lives instead of simply trying to keep up with sending and responding to emails, phone calls, and such.

 

As a caregiver the job of ‘information officer’ is always one of many hats you wear. The journal age is time and energy saving. <grin> (for me at least)

 

“Living with MS” certainly can isolate you. Interestingly the journal era, in a sense, empowers you to ‘get out’. And enables friends and family to 'drop in' any time of night and day.

Devil’s Playground

“This is the Devil’s Playground!” loudly and abruptly exclaimed one resident.

 

What could I possibly have been doing that was so exciting you ask?

 

I found myself playing cards tonight with Patti and some of her fellow residents. Having just been in Las Vegas where any card game I observed resembled a pool of sharks this was comparatively the ‘Twilight Zone’!

 

The resident referenced above had to be 85+ years and seemed near asleep as she played except for her clockwork sudden shrieks on the morality of card playing. (She repeated this NEWS what seemed to be exactly every 5 minutes) <grin>. This served to not only wake her up but every one else who might be nodding.

 

I was surprised to find half the ‘players’ to be of Patti’s age suffering from a variety of neurological disorders and the other half to be ‘elders’. Not ONE player was competent to play their own cards and the two volunteers had their hands full.

 

In the Old West gun fire would have been flying as cheating (though I am sure inadvertent) took on new dimensions.

 

Patti won 2 out of 3 while I was there and had won the game before I arrived. Maybe I SHOULD have taken her to Las Vegas

 

Mainly I had just stopped by to check on my redecorating from the night before, as I am not a handyman. I wanted to make sure nothing had fallen off the walls.

 

Some times you just try to do a good deed and you still end up in the “devil’s playground”! <grin>

Redecorating

We dropped by to visit and redecorate this evening. Armed with a step ladder, power screw driver, and screws I am dangerous. <grin>

 

Problem with decorating any space for Patti is that you must think mega size for her to be able to see it. Contrast is also important. Light colors against a dark background, for whatever reason, improves her ability to see anything.

 

So many little things have just gone undone since Patti moved in simply because who goes visiting armed with a screw driver and screws. Most people bring candy, sweets, or flowers yet you never think how important a screw driver and screws can be.

 

We had a chance to chat about our trip and have some fun trying out different arrangements. It’s always kind of fun to change ‘the look’ of your environment.

 

Patti ‘remembered’ Megan had been away and wanted to hear about her trip. She wasn’t sure if I had been away or not. She thought I was just kidding her. <grin>

 

Last summer Megan was away on a summer school trip and I think her long term memory is stronger. Her short term memory is always a mess from MS. I think the two summers were just all mumble jumbled in her head.  Or perhaps because I have been posting through the journal and visitors sharing the travels I may have seemed closer. Whatever it’s all part of “living with MS”. You just have to work ‘outside the box’ sometimes to communicate.

 

It was fun and ALWAYS interesting. <grin> One thing about the MS damage to Patti’s cognitive process is that you have absolutely no idea of knowing where the conversation is going to go. 

On the Road Day 8: Death Valley to the East Coast

After closing the San Diego Zoo we drove about 3 hrs North West to Barstow, CA and caught a couple hours sleep.

 

In the morning we took a short hop through Death Valley cruising with the top down in the convertible back to Las Vegas to fly home.

 

With the setting sun in the East we landed at Dulles Airport in Sterling, VA.  We flew in and out of Dulles Airport so that we could take a non-stop flight to and from Las Vegas.

 

Then just a short drive back to home sweet home.

On the Road Day 7: Mexico

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

Mexico was a fascinating experience. Neither Megan nor I are much for the bazar style of negotiable pricing. However it was certainly fun and what we did buy was unbelievably inexpensive.

We drove to a Border Parking Lot on the US side and took a Mexicoach Shuttle into Tijuana and walked back across into the US later in the day.

The shuttle bus ride was actually rather eye opening in that the route looped through the non-tourist areas of Tijuana. It is truly "Third World" in contrast to San Diego. Megan and I were stunned to see warning signs along the highway leading away from the border. Back home you see yellow signs with pictures of deer, warning of deer crossing the highway. California actually has yellow signs with pictures of a family fleeing across the highway, warning of illegal immigrants running across the highway. It was the most bizzare series of signs I’ve ever seen.

The remainder of the day through evening we spent at the San Diego Zoo. We are major zoo fans. Megan was practically raised at the National Zoo in Washington DC so it takes a lot to impress us. The San Diego Zoo is IMPRESSIVE. Other zoos may have them beat for animal head counts and variety of species but no one can rival the landscaping, layout, and ambiance.

Then it was time to head north west into the desert toward Las Vegas. However not without one last California traffic jam. (Even at 10 PM on a Sunday night trying to leave San Diego!) You could not PAY me to live in that state. People LIVE in traffic. No where on the East Coast can traffic even come close to California.

Tomorrow we fly home East, ending up back in our own beds somewhere around midnight. Eastern time, I think?

On the Road Day: 6 San Diego

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

Day 6 began with a successful quest for the elusive Hollywood sign.

Then what should have been a simple 2 hr drive to San Diego became a nearly 5 hour traffic jam from L.A. to San Diego. Only in California could the car pool lanes move slower than regular traffic lanes. Half way through we took a break at a vista point so at least Megan could get her first live view of the Pacific Ocean.

By the time we arrived we settled for a Mexican dinner outdoors in ‘Old Town San Diego’ at El Fandango with strolling Mariachi musicians and all the atmosphere of Mexico but without the risk of 'Montezuma’s revenge'. This eating outdoors in the Southern California weather could easily grow on you <grin>.

We still had time after dinner to be tourists in ‘Old Town San Diego’ for an hour or so before beginning our evenings "Ghosts and Graveyard" Tour of San Diego after dark.

Several years ago in Williamsburg, VA we inaugurated taking the ‘Ghost’ tours of whatever city we were visiting instead of the conventional day tours. You basically see and learn the same knowledge except with a different twist.

Tomorrow we plan to visit Mexico for a couple hours and spend the rest of the day in San Diego before heading north toward Las Vegas. The following day we fly back home.

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(from Patti's Mom) Hi Patrick and Megan,

We drove up to the craft show expecting to take Patti shopping there BUT she surprised us and had already did her shopping....I do not know who pushed her around but she had purchased (I think) two Tshirts and a ring for herself. Hopefully you set up an account for her because we could not find out how she purchased anything. (grin) It was really a very nice craft show....many, many stands which had to be held indoors due to very, very rainy weather. Harold and I looked over all the stands with Patti and we purchased a few nice, homemade items. An old friend of mine that I did not see for 10 years or more was manning her stand of beautiful scarves, etc. We then went back to Patti's room and played two games of Trivial Pursuit and watched some of the Olympics with her before taking her over to her dining room. It was a very nice visit and I have not seen Patti so jovial...I think she misses shopping. Hope you two are still having a wonderful time.

On the Road Day 5: Los Angeles

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

 

Day 5 with no hotel change nor travel was just a day to play for ‘kids of all ages.’ We spent the day at Universal Studios, riding rides, watching shows, and touring studios. It was nice to leave reality at the gate and disappear into the make believe we’ve come to expect from Hollywood.

Not a big picture taking day as roller coasters, water rides, and such are not exactly digital camera friendly.

I personally found it most fascinating that on the opposite side of the facade of Whoville from "The Grinch" is the Bates Motel set from ‘Psycho’ . Some set designer had a warped but creative sense of humor.

We finished the night at Universal City Walk with dinner at the Hard Rock Café. While an 80's tribute band played a live outdoor concert we dined at an outside table on a perfect Southern California night.

Patti if you remember the last time we were in LA pre-MS it was nearly the same agenda except we had the small earthquake to make the trip ‘special’.

Tomorrow we are off to San Diego.

On the Road Day 4: Los Angeles

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

Morning 4 we have time to enjoy the grounds of the 29 Palms Inn and the Oasis of Mara which it surrounds.

We have an appointment at the Integratron in route to LA for a sonic bath rejuvenation. (I found the place while net surfing in preparation for this trip.) Strange as it may seem, and unusual as it WAS, it produced both extraordinary relaxing and energizing results. I DO NOT relax however I LOVED the time there and genuinely relaxed for the first time in I don't know how many years.. Great people and well worth the detour if in the area.

Entering the smog cloud masking the LA area is MOST noticeable if you have just spent 3 days in the near pristine desert air. It’s almost sensory overload between smog, noise, traffic <grin>. Ah! The price of civilization!

We’re staying in Hollywood Hills so we checked in and walked around Hollywood Blvd looking for stars on the walk of fame, then continued the tacky tourist experience by taking a  "celebrity homes" tour van.

The tour was somewhere between being held hostage by a bad comic posing as a driver, to a pseudo stalker posing as a driver. <grin> If it had lasted one more minute I would have had to "kick out back window in emergency" to escape..

We cruised Sunset Strip in our convertible a couple times before settling in for a late dinner at a sidewalk table at Mel’s Diner.

When traveling with me any day can go from rejuvenation in sonic chambers in the desert to cruisn' Sunset Strip. Why hold back?

 

On the Road Day #3: Joshua Tree National Park

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

 

"London Bridge is falling down ..." Who would have dreamed that childhood rhyme could end up piece by piece reassembled in the Arizona desert? The ironic twist is that when I was just a bit younger than Megan I visited the exact same London Bridge with my parents when it was still in London!!

Still avoiding major highways we headed West into the Mojave Desert for California and the Joshua Tree National Park. After 100+ temps, rock climbing, gecko chasing, and Joshua Tree picture posing we ended up in TwentyNine Palms, CA.

29 Palms Inn is a desert getaway with isolated adobe bungalows on the fringe of Joshua Tree National Park. It is a lodging oasis from conventional motel/hotel fare. Walking back from the inn restaurant the darkness is darker than you can imagine. The only sound is the noise of your shoes crunching in dirt. Suddenly the warped howling of a pack of coyotes closer than want but invisible in the darkness shatters the solitude. Somehow it all leaves you feeling a sense of the timelessness of this piece of earth. .

There is more than just beauty in the desert. it borders on the mystical. In the morning we say good bye to this ‘Walden Pond’ of the West and head to Hollywood, CA!!